Religion Makes Me Tired

Maybe I’m just angry.

Angry at the changes and upheaval in my life.  My health struggles.  My MENTAL health struggles.  My fertility struggles.  How my vision for something whole, and beautiful, and welcoming, just utterly blew up.

Maybe my vision was unrealistic.  Maybe people just suck.

And maybe I need to let go of the idea that people should like what I have to offer.  Or that I can accommodate the needs of so many varied people.  That it’s really OK to say to people, “This is not for you.”

Of course, you can tell them that at the outset, that things may change, they may find it’s not for them…and they don’t believe you.  Or they say, “Oh, of course.  And if so I know I can just go my own way.”  But it’s still tainted with rose colored glasses.  That parting will of course be only with love.  There couldn’t possibly be anger and resentment–afterall, Wicca is all about love and acceptance, right?

HAHAHAHAHAHAHAHAHAHAHA.

Wicca is still a goddamn religion which means it has humans and all of their goddamn faults.

Know how I got myself raped?

Fell for a boy who claimed to practice Wicca.  Never saw any evidence of it except for a few books hanging around his house.  But nonetheless, I was young, inexperienced, and looking for other Wiccans.  Met him on Witchvox.  Things happened.

Is it Wicca’s fault I got raped?

Of course not.

The point is, so many of us come to Wicca, or any kind of Paganism, with stars in our eyes and magic in our souls.  It seems beautiful.  Flawless, like a precious diamond.  So many beautiful facets, all different but equally valid.

When we find that first crack, it doesn’t seem real.

When we find all of the inclusions, the chips in the corners, we go, “Oh, but it’s perfect in its imperfection.”

I don’t think we can really understand it until we realize it’s really just a piece of shiny glass.  Fragile.  Imperfect.  Ready to shatter, but at the same time, ready to slice us into a thousand little ribbons if you run your finger along those cracks in the wrong direction.

And I’m just tired.  Tired of the same arguments.  Tired of people fighting over what is and is not Wicca.  Tired of having to defend it both within and without.  Tired of petty crap.  Tired of the anxiety.  Tired.  Tired.  Tired.

Tired of people tearing each other down.  No one’s research is good enough.  No one’s answers are good enough.  No one is authentic enough.  No one knows as much as someone thinks they should.

It’s like we’re trying to fill an empty void by asking everyone else to fill it for us.

If that which you seek you find not within yourself, you will never find it without.

 

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I hate the Air Element

Right now, I really hate the Air element.

That might not sound very “witchy” of me, but honestly, these days, I don’t feel very “witchy” anyway.

I’ve gone through Hell.  Real, legit, mind numbing, heart wrenching, fire and brimstone, pretty sure I’ve been playing pinochle with the Devil, Hell.  The fun part is learning that you don’t have to die to be in Hell–it’ll meet you right here on Earth.

There are, afterall, worse things than dying.

Like surviving the death of your mother.

I wasn’t sure I would.  Or I could.  It wasn’t even the first couple of weeks after she died that were the worse.  Those were filled with funeral arrangements and memorial plans and cleaning the house and balancing family dynamics and Other Drama.

Then the funeral was done.  There was nothing else to do.  I couldn’t keep anything straight in my mind anymore at that point.  I Fucked Up Many Things.

Split my coven.  That was a goddamn doozy.  Everything I did, I did out of love.  Trying to help everyone reach their potential.  To feel safe, wanted, appreciated.  I had Big Dreams, Ideas, Hopes.

I feel like the King of All Cosmos saying it with capital letters.  Play Katamari if you don’t know what I’m talking about.

And I spiraled into a depression so profound I almost DIDN’T survive it.

Did you know that there was such a thing as “grief attacks”?  It’s like a panic attack but caused by grief.

I have learned there there is such a thing as grief attacks.

I missed work.  I lost interest in Everything.

Wicca.

The core of my identity.  The thing I’ve focused so much time and energy on.  What I believed in beyond all other things as being important to my understanding and engagement with the universe writ large.

I didn’t want to lead Samhain ritual.  I didn’t want to Do Anything.  I didn’t want to recognize my mother had died just because It Is The Holiday Where We Do That.  I wasn’t sure I wanted to practice Wicca at all anymore.  I’d had my heart ripped out of my chest, stomped on, and driven into the ground by pain, loss, and other random bullshit.

It was like having my soul pillaged of all meaning and connection with Anything.  Everything.

I spent weeks mourning.  Mourning my mother.  My covens.  My faith.

But timing is everything.

So much happened, so much needed to be done.  Thanksgiving, Family Christmas, Christmas Part One, My Birthday, New Year’s, Christmas Part Two….and I was working like a fiend.

Drove myself into the ground with work.

The holidays ended and I…broke.

I intended to end my life.

That night, if my husband hadn’t made me go to bed with him, I had every intention of going to the kitchen and swallowing a bottle of Tylenol.  And I have the reeeeealllly big bottles.

But, he dragged me to bed with him, not knowing what was going on in my head.  And in my depression, I did not have the energy to go to the kitchen from my bed and follow through with my plan.

I went to work.  I vomited blood.  I got scared.  I went to the ED.  I forgot they asked you standard depression screening questions…I was surprised into answering honestly.

I was OK enough at that point that they let me go home.  Two days later, I was not OK anymore.

My husband took me to the hospital.

I spent a week finding the strength the face my demons.  To learn new skills.  Put things in perspective.

It’s kinda freaky when the therapist looks at you and takes the biggest deep breath and makes the statement that you have been through A Lot, and they Are Here For You.  Out of everyone else in the room.  Oh there was support and nods of understanding for the others, but it puts things in perspective that I have really been through Hell when even the objective third party says “Holy Hell” in response to your story.

And these people I was in therapy with had been through Some Shit let me tell you.

It still didn’t answer for me whether I wanted to still practice Wicca.

I’m still not sure.   I thought I was.  But I think that’s part of the healing.  Making a choice, and letting it just sit there for awhile.  See how it fits.  Realizing it’s never going to fit the same way again.  Decide if you like the new fit.

We’ll see.

A huge chunk of the bullshit?  It’s all Air element shit.  Communication.  Or rather a lack thereof.  Oh, and, as it turns out, lies.  Probably more than anyone is willing to own up to.  It doesn’t matter.  The part that always gets me is, “If we don’t say anything it’ll be OK.”

Maybe for certain things.  I can see it.  But over and over again?

The media?  Whatever.  I don’t care if everything is “fake news” or “liberal propaganda” or “right wing conspiracy theories.”  The problem is that all of the news is SUBJECTIVE.  Oh, there might be some facts at the core of it, but every damn thing has commentary attached to it.  That gives it bias and turns something that could have been objective reporting for the people to form their own opinions about into subjective editorializing on everything.

And I’m EXHAUSTED by it.

“Believing” coronavirus isn’t real doesn’t make it fake.  “Believing” it’s a conspiracy doesn’t mean people haven’t lost their loved ones.

Saying a thing also doesn’t magically make it so.

MAGIC IS A FUCK LOT HARDER THAN THAT, HUMANS.

This lack of good quality communication, civil discourse, the POSITIVE air element things?  It’s resulting in violence.  Willful ignorance.  Anger.  Death.

It’s literally resulting in death.

Which still isn’t the worst thing.

The worst thing is watching your mother die for 25 days from brain atrophy and aspiration pneumonia because she gave up on living.  The worst thing is watching putrefaction bubble up from her lungs and listening to her death rattle nonstop for three days straight, and not being able to stand being in her room for more than a few minutes at a time because it’s just so goddamn awful.  And nothing is helping.  There’s nothing TO help.  She just needs to die.

I laid in the bed in the room next door for hours at a time, crying, wishing there were more I could do.  Knowing that it’s harder on ME at this point than for her because she’s lost consciousness.

Although somehow she didn’t lose consciousness after losing 4 LITERS OF BLOOD from a massive GI bleed a week prior.  Except she’s so morbidly obese that her body just has so much in reserve.

And everyone, Everyone, says she’s on her journey.  But she has so much existential pain I can’t do ANYTHING about, she can’t let go just yet.  I tried for YEARS to help her heal her mind and her heart.  Nothing.  Nothing.  Nothing helped.

I gave all my love to her.  I owe Everything to that woman.  My very life twice over, when she gave birth to me, and when she rushed me to the hospital when I was 2 weeks old and stopped breathing.  I had pneumonia.

Three years ago, when she almost stopped breathing from pneumonia, and I called 911.

And she has been clear with me–she wants to die.  No interventions.  Don’t Do Anything, Let Me Go.

There was nothing to do but wait.  Give her comfort meds, and wait.

My aunt is her twin.  She heard my mother’s first heart beat.

And her last.

 

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Broken

How do you explain that feeling of being broken?

It exists on multiple levels.  Physically.  Emotionally.  Mentally.  Financially.  Spiritually.

My mother died on September 22.

There is so much to process.  So much that went wrong.  So much that I could not control.  So much that doesn’t make sense.

There’s the damage from our relationship.  From her own damage.  How that affected us.  And, ultimately, affected me.

And in the past year….Goddess.

I got a new full time job working in hospice.  Don’t get me wrong–I love the work that I do.  But it is trying in many ways as well.  And it’s no fun explaining to families over and over again that there is no free lunch.  Sure, hospice services are provided at 100% by Medicare Part A—if you qualify, of course.  Most people do when they’re referred to hospice.  Some don’t.  Regardless, neither Medicare nor hospice will pay room and board.  That is always an out of pocket cost, UNLESS you qualify for Medicaid.

And Medicaid?  That’s not as straightforward as you would think, either.  “I make no money” is not enough to qualify you.  And they don’t care what your intentions were.  I never intended to have my mother placed in a nursing home.  It did not occur to me that a point when come that it would not be safe to have her at home–at least, I didn’t think it would come so soon.  I figured that by the time that point came, she’d be close to dying–I would take FMLA and be able to provide her bedside care myself.

HAHAHAHAHAHAHA.  That didn’t happen.

But, because she did have some assets–and I was mistaken that some of those were in my name and not hers, as she had told me one of the accounts was now in my name but it wasn’t–she didn’t qualify for Medicaid.  Now there’s a bill coming.

So, I’m financially broken.  And I don’t want anyone else in my family to take that on.

On top of that, what care I did provide in the home…well, my shoulder is messed up.  It’s not terrible, and it’s getting better.  I had already strained it last year when I thought I was 16 still and could do lifeguard training again.

But beyond that, it was almost a year ago now that I was diagnosed with thyroid cancer.  I had a total thyroidectomy…and honestly, things started to seem brighter after that happened.  Oh yes, having cancer is terrifying.  I recently admitted a person to hospice with the same diagnosis as mine, but theirs was not found until it was already Stage 4 and had metastasized.  My anxiety was initially terrible because I have had an anxiety disorder.  But as my hormones leveled out after the surgery, my anxiety actually disappeared.  It was gone.  I was feeling confident, sure in myself.  I had a plan.  We were going to make it all work.

Then Mom went downhill.

Plus, don’t forget the financial burden of two surgeries, multiple hospitalizations, and radiation treatment this past year.

More financial breaking.

As all of this year started a year ago, I also had grand plans for my coven.  We were going to take on a huge class of neophytes, each initiate was going to be mentor to two people.  We were going to train and grow these neophytes with the plan that we would hive as soon as was feasible, for many reasons–not the least of which was that the new class of neophytes are all located in the same general area, and the current initiates are mostly at a distance.  Instead of just founding a new coven, we were going to do it “traditionally”–grow and hive.

Except when my world started to implode, as High Priestess, I did not have the time or energy to give to the coven that it needed.

People started to get upset with each other.  They stopped trusting each other.  Some would reach out, only to get slapped back.  Some people stopped showing up to lessons and meetings.  Things said were misinterpreted, misunderstood.  People had certain expectations that were not met, even though they were never promised.  A certain level of competitiveness started.  Assumptions started to be made.  Rumors started to grow.

And because I was in a world of hurt, not everything was shared with me.  And I appreciate that–after all, people need to be able to settle their own differences whenever possible.  Except things were only getting worse, not settling.

So when I learned of issues, I stepped in…and got them settled.  Or so I thought.  Things seemed OK.

Then a new crisis would arise, I would step back…

And issues would start again.

And people started to step up, taking control, scheduling rituals, lessons, meetings, what have you.

Alleviated the burden.

Things seemed OK.

I knew of some concerns that were rising, but opted to wait and see.  I was not going to act on hearsay and accusation alone, it wasn’t worth it.  And I made the decision–we were going to go ahead and hive.  It was too stressful, trying to keep together what was obviously from the start two unique and independent covens, with strong and disparate personalities.  I was going to do it after Samhain.

And then it exploded again.

So we hived the same day my mother died.

But the truth is, my spiritual brokenness started before all of this.  I have been able to do NOTHING for my own spiritual growth and health for the past year.  I haven’t read a book.  I haven’t done my own ritual.  I’ve barely touched my altar.  I haven’t spent more than 5 minutes in nature.  I haven’t developed lessons, workshops.  My meditations have been lackluster–and not just my own, but even my guided meditations.

There is no joy.  There is no connection for me.

I’ve even thought about seriously converting to Catholicism.

I always said if I weren’t Wiccan I’d be Catholic.  I LIKE ritual.  I like routine.  I like community. I like shiny things.  Catholicism has those things.  And I’m not necessarily diametrically opposed to the Church.

But, I also don’t agree with the bulk of the teachings of Christianity.  I cannot accept that Jesus is the only way.  I can’t even accept that his death for our sins is so damn important.  It feels manipulative, actually.  I have to worship you because you did this thing I didn’t ask you to do?  I mean, thanks and all, but don’t give me a bill for a service I didn’t ask for.  That was all you, kiddo.

So, converting doesn’t solve my problem.  I’d still be without joy and connection.

Why did I think it even would?

Maybe because being in a position of leadership has been exhausting.  Am I burned out?  There’s a good chance of it.  Being a member of a church instead of the leader of a coven is certainly less responsibility.

And maybe because I feel wracked with guilt.  I need forgiveness.  And Christianity has a lot to say about forgiveness.  In Wicca, that forgiveness has to come from within.  But I am not feeling capable of doing that, so there is a part of me looking from it from elsewhere.

Though outside forgiveness means nothing if I can’t internalize it.

But still, there’s no joy.

I didn’t want to do Samhain.  I don’t want to do any more ritual.  I don’t want to do it.

And maybe it’s my grief.

Maybe I just need to give it more time.

 

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HALP! My taste buds are dead!

When they prepare you for RAI, they tell you, “There’s not really any side effects from the medication.  Oh, you will need to be isolated from other people for like four days.  Well maybe a week just to be safe.  You might want to think about getting some lemon drops, too.  Not the sugary kind, but the good and sour kind.  The doctor will probably want you to have them.  Why?  Just to protect your salivary glands.  Some people get a little dry mouth because the RAI affects those, too.  There’s no pain but you can take ibuprofen if you need to.  You can eat anything you want after 24 hours!  Any questions?”

LIES.  THEY ARE ALL.  LIES.

Okay not really.  But they may as well be.

It’s true, the medication ITSELF does not really have any adverse effects though some people can get nauseated.  If you’re prone to getting sick from meds, or already feeling queasy, ask for some anti-nausea medicine.  But seriously, probably the most irritating thing was not being told any specific instructions about my isolation until THE DAY OF.  I looked almost everything up online, most of it was accurate, thank the gods, and I over-prepared rather than under-prepared (I had an extra human being in the house to help–THANK YOU DADDEO!!), but I really did not know how long I’d have to go without touching anyone.  Or how much longer I’d be on the low-iodine diet.  Or that I couldn’t make food for anyone else during that time.  So, leaking radiation is a pretty important side effect they should really prepare you for at least a couple of days ahead of time so you can make plans!  I, for instance, work.  I am a nurse.  This means I have to touch people.  I am grateful I could take the time off of work for treatment, but what about people who don’t have the vacation time, or have to give so much notice so they don’t get in trouble with their employer?  I am fortunate to have amazing supervisors and that I work for an extremely compassionate company, but that is not true for all people who work.

The lemon drops are a thing.  That’s not a total lie either.  It’s amazing how many they want you to eat, though–2 to 3 EVERY HOUR for two days while you are awake.  Oh, and if you wake up in the middle of the night to pee?  Go ahead and pop another one.  Good gravy make sure you brush your teeth because all that sugar really makes them feel gross, let alone the damage it’s doing to the enamel.  The RAI does affect your salivary glands, and the sour drops do help–except in my case, where I have ZERO issues with dry mouth.  HUZZAH!  I stopped taking them after about 5 hours because I couldn’t take it anymore.  Now, that is MY story–if your doctor wants you to take the lemon drops, DO IT.  Do not stop taking them without consulting your physician.  What I did was a bad thing, not a case study for why it’s OK for you to be non-compliant.  TAKE YOUR LEMON DROPS.  They are tasty.  But yay, no dry mouth!

The other thing?  About no side effects?

BULL.

I can’t taste a thing.  Oh, no, it’s not that I have a metallic taste in my mouth, which was a possible effect I read, again, online.  It’s not cottony.  It’s not “altered.”  It’s GONE.  My taste buds are fried.  Normally anything above “mild” and I’m reaching for bread and milk to make the pain stop. My mother who can eat habenero pepper anything?  I got a southwest style wrap at a deli.  I gave her the leftovers.  I told her it was pretty tasty.  “Whoa–this has quite a bite to it!” … “…What?  I thought it was good but it’s not hot…” “Yes, yes it is.”

Now that’s kind of cool.  Suddenly I can tolerate spicy food.

Except I can’t taste anything else.

Strawberries?  Chewy water.  Pizza?  My most favorite food in the world?  Old cardboard.  Ice cream?  OK most ice cream is still fine.  Because ice cream.  Biscuits?  Buttery old cardboard.  Freeze dried apples, which I loved while on low-iodine diet?  Crunchy aerated cardboard.  Salsa?  Chunky water.

Ironically, I’m eating MORE because I’m seeking flavor.  “If I keep eating this terrible tasting thing I know is delicious, eventually it’ll become delicious again, right?  That’s how this works?”  NO BRAIN.  THAT IS DECIDEDLY NOT HOW IT WORKS.  And I have a pouch the size of an egg for a stomach.  I CAN’T ACTUALLY EAT MORE WITHOUT PUKING.

There is no good follow up comment to that.  Use your imagination.  Or don’t, your call.

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Radiation Leak Contained

I intended to blog about my daily experience of RAI treatment, but I just…couldn’t.  Not only was I nervous about it, but it made me mad–not only did I miss the opening night of How to Train Your Dragon 3 (Toothless = my beloved Emily Cat, may she RIP), but I also had to miss ConVocation 2019 in Detroit, an event I absolutely loved last year and was my first Pagan con.

So now you get my thoughts s/p treatment.

In case you are a person who is looking for information on what to expect because you are also going to receive RAI, I give you this one caveat: every hospital, every treatment center, has its own processes and rules regarding treatment and isolation afterwards.  It also depends on your age, whether you have children at home, and so forth.  This is just MY experience.

Day 1: Thyrogen Injection.  This was basically no big deal–I went to the hospital and got a shot in the ass, with promises of a shot in the other ass to follow the next day.  It does need to go in the ass because it’s a lot of fluid, and even with it going in the big muscle of the gluteus maximus, it stings–but this quickly abates and there were no side effects.  I was sent on my way with instructions to come back to the hospital in 24 hours.

Day 2: I whined until my husband agreed to go with me.  I’m exaggerating–he wanted to support me but wasn’t sure what would be the most helpful since he’s also preparing to start a new job and had training to do to ensure our financial survival vs. holding my hand for a butt shot when I was able to do it the day before like a big girl all by myself. However, I knew less of what to expect this day because it was a two-part adventure.  And I wanted to be greedy and get some alone time with him.  So we went to the hospital, got a shot in the other ass as promised, and we were told to return around 1pm.  Since we were on the West side of Cleveland, which is not common for us, we took advantage of it and went to Great Northern mall for some relaxing shenanigans.  However, seeing an Auntie Anne’s while you’re still on the low-iodine treatment is like a unique form of torture.  Soft pretzel-y happiness…

I went back to the hospital at the appointed time, husband in tow, who was also sleepy with a warm full belly of food court Japanese cooking so he passed out in the waiting room, much to the amusement of the radiology tech, for the second part.  This is basically a low, low dose of radiated iodine so that they can evaluate your uptake and give you the proper amount of radiation to kill off any thyroid cells with the RAI.  You can’t touch the pills with your fingers–and if you can’t swallow pills, you better learn how.  They are not small, they’re like the size of extra strength Tylenol capsules, they cannot be opened, and it does not come in liquid form.  You can take them with applesauce but you can’t chew them.  You get 3 of them.  Thankfully after the debacle of chewable Augmentin as a child that resulted in hours of tears, my mother ensured my ability to swallow pills.  I took them, they told me to be back at ass o’clock the next day, and off we went!

Day 3: Now I was promised that I would be put in a special room, and some CIA shit would go on where they would go behind a lead door, and a container would come out of the wall, and a mysterious voice on the intercom would tell me to open the case and take the pill inside…

None of this happened.

The first thing was getting scanned–whole body scan to evaluate my update of iodine, and SPEC scan with CT to get really good images of the thyroid bed.  THIS IS TOTALLY NORMAL.  If your radiology techs don’t warn you that they might need extra images, don’t freak out.  They just forgot to tell you that your radiologist is persnickity.  This took about an hour and a half all told from the time I checked in until this phase was over.  They told me to come back in six hours.

Well I hadn’t planned on this.  Thank the gods I had taken a cheesy romance novel with me (that was actually kind of charming because the male protagonist was a manly-man but also had the-feels and self-doubt and the female protagonist was in control of her own sexuality despite it being like 1870’s England and she was part of the nobility).  I managed to read all but the last 50 pages before it was time for treatment.

I spoke with the doctor who gave me all of my instructions about my isolation.  Because I do not have small children at home, I did not have to stay in the hospital or at a hotel.  However, I may as well have because I still couldn’t feed anyone, or snuggle with them, or be within six feet of them for more than an hour a day!  And she said I can’t get pregnant for 12 months, although all of the references say 6 months is sufficient.  We’ll see.

I signed my consent forms, and the tech came in…my dose was already in the room in a lead container.  She took it out and placed it in a medicine cup–same deal, no touchy the pill (but it’s ok to put in my mouth?), and swallow.

And that was it.  So anti-climactic.

I drove home, feeling strange to myself, knowing that the treatment would kick in, but I likely wouldn’t feel anything.  Radioactive on the inside but…outwardly, no change.  No glow, unfortunately.  No super powers either, which just seems lame.

I spoke with my parents for my allotted hour when I got home.  As I was talking to them, I started to feel “fireworks” going off in my neck.  It wasn’t really painful per se, just surprising and a little uncomfortable.  Almost like extra prickly pins and needles.  This came and went for the next 12 hours.

Days 4-7: I watched so much American Dad.  And Futurama.  And cheesy Netflix movies.  And did literally NOTHING productive.  I spent an hour a day visiting with family; my dad brought me my meals.  My husband used a stick to give me affection (poking me in the chest with it, petting my head with it, kissing one end of it and then poking my cheek, etc.).  The cats kept their distance for the most part.

Today is the first day I can spend within 6 feet of anyone for more than an hour.  Still no snuggles or spit-swapping, but some touches are OK.  The bathroom is still mine for the rest of the week, and I still can’t prepare food for others.

I just can’t wait to sleep in my own bed.

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I like to “Praise the Sun” When I am in the Hospital Solarium

I was admitted to the hospital.  Again.

Since starting the low-iodine diet I have been twitchy.  Literally twitching.  Like, uncontrollable muscle spasms twitching.  I did, afterall, say that low calcium was a risk on the low-iodine diet, and doubly so for someone who has had gastric bypass and does not absorb calcium well in the first place.

I would like to throat punch my parathyroids for not being fully functioning yet. *ba dum, CHA!*

Thankfully it was a short visit.  A trip to the ER, two doses of IV calcium, tweaking of my calcium related medications, and now the twitching is down to subtle glitches I only notice if I am completely still.

Well and the heart palpitations.  But I’m used to those.

At the end of the hall in the hospital I’ve been admitted to a few times now is a room that is labeled “Solarium.”  My husband plays a lot, and I do mean a LOT, of Dark Souls.  If you have any familiarity with the game, you already know where this is going.  If not, I dare you to google “Solaire Dark Souls.”  There’s also a great music video with a giant corvid and the song “Take on Me.”  Watch it.  It’s ridiculous.

So when I’m in the Solarium during my walks, I “praise the sun” in Solarian fashion.  It does make for a nice stretch.

There was little on the menu I could eat and still remain compliant with my low-iodine diet,  I wanted tacos SO BAD.  Today I finally got them.  If you’re willing to put a little effort into it, your diet can truly be delicious when you are low-iodine.  But Goddess help you if you don’t like to cook.  I used fresh jalapenos for the first time ever today.  My only piece of advice?  Wear gloves or wash your hands REALLY WELL after handling fresh hot peppers.  I’m a Yankee child at heart and by tongue, so a little heat goes a long way–and fresh jalapeno definitely retains more heat than the stuff you get in a jar!  But this Yankee also managed to make authentic Mexican food by herself.  I think my former Mexican patients at the dialysis center would have been proud.  I even fried my own tortilla chips!

Tomorrow I go to a different hospital to begin the process of receiving RAI.  I will get my first Thyrogen injection, and hopefully some more instructions on what to expect.  I do not even know what to ask about, and reading what I should ask about isn’t really helping either.  I know that I cannot sleep in the same bed as my husband, though, and I do not want to expose the cats to excess radiation, so I got an air mattress and sheets for while I am in isolation at home.  Cleaned up my spare room/office/witchy room.  I’m going to sleep amongst the magicks!  My dad is also going to come since I can’t feed anyone else while I am in isolation, or spend much time around people.

Just a few more days and I can eat stuff with calcium in it again.  I miss my protein shakes.  And ice cream.

T minus 2 days to radioactive containment failure…

 

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Give Me that Hypothyroid Life

I blame my anxiety disorder on my thyroid.

My nodule was found when it was already large. It was 2.5cm is one dimension. I can’t remember the other ones off of the top of my head. But, large. That was in 2012.

So you know it had to be there for awhile to get that big in the first place. I started with some anxiety and depression by my senior year of high school in 2002, and it was full blown by the time I was a sophomore in college in 2004. I have been tired and struggled with weight issues all throughout this time as well.

Most telling was the fact that I lost about 50lbs after graduating from college in 2007. Nursing school meant I put about 30lbs back on (people LOVE feeding nurses), and when I went to try to get the weight off again in 2010—it wouldn’t budge. I tried low-carb dieting. I was doing two-a-day workouts with a mix of cardio and resistance training. I was counting every morsel that went in my mouth. Yeah, I got stronger.

But I actually GAINED weight.

And not just “you’re trading fat for muscle” weight. My actual size went up. This was disheartening, and I gave up. I decided life was too short not to enjoy it, and I wasn’t going to torture myself.

Now granted this meant I was putting junk in my body in addition to healthy food. I certainly overate. I ballooned in size, and my anxiety ballooned with my waistline.

As my overall health declined, I went to see doctors. I was diagnosed with sleep apnea. This helped a lot!…but it still wasn’t right. I saw an endocrinologist!…they gave me some Cytomel, thinking it might give me a boost to have some extra thyroid hormone floating around in my system. It didn’t help. They checked my TSH, free T3 &T4, did a FNA of my nodule, ultrasound…everything was normal. Everything was benign. Or so they said.

My anxiety was treated by a counselor in college (who was amazing) coupled with Lexapro. Eventually I was able to get off of the Lexapro, and I stayed off of it for a long time. But, as my health worsened…my health worsened. Life happens, and it became clear I needed something to help with the anxiety and depression again. Lexapro saved my life twice over.

Still, even after doubling my Lexapro dose, I was having major breakthrough anxiety. I was prescribed Xanax. There were times I was taking it every day, and other times I wouldn’t touch it for weeks. Xanax, like all controlled substances, is best when used correctly and not abused for the “high.” Use it for anxiety, not to “feed good.” It’s when we start using it when we are NOT symptomatic that the potential for addiction becomes an issue. And there are some people who are just prone to addiction. Let’s stop blaming each other and do something proactive about addiction.

Anyway.

Then I got my diagnosis. Cancer. Of COURSE I fell apart. Of course I sobbed. Of course I couldn’t believe it—even though I knew, in deep in a hidden part of myself, that I had cancer.

My surgeon got me in ASAP to have the rest of my thyroid removed. It’s been 2 months since the FNA confirming I would need to have a lobectomy. I was nervous and crying leading up to surgery on 12/31/18. I scared myself afterward, waiting for the pathology results. If you’re waiting to hear you have cancer, don’t do research on Google about cancer. That was a bad move on my part.

The pathology came back on 1/14/19. Surgery was 1/16/19 to have the rest of my thyroid out.

And you know, I’ve only had ONE panic attack in the last month?

I have freakin’ CANCER. But they took the offending matter out, and while I’m certainly not happy about having cancer, and yes, I’m scared, I’m not utterly debilitated by it emotionally. I am functional. I am so functional and calm my family is like…wut.

I am still tired easily. My hair is falling out because I’m hypothyroid. My skin is so. Dry.

But I am OK.

And I will be OK.

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Done with Cancer #Capricorn4EVA

Yeah that’s meant to be an astrology pun on having cancer.  I realize its weak.

But maintaining a positive outlook and sense of humor is incredibly important to dealing with having The Big C.  And I love, and I mean LOVE, a terrible pun.

And I have too much time on my hands at work today.  I suppose I should be glad for humanity at large that I am not swamped with hospice referrals, but it does make the time drag slowly.

Precious, precious time I would rather be using with my family or working on personal goals.  However, the work I do in this job is also extremely important to my community.  It’s balance, as usual.  Having cancer does not mean I get to check out of being a human.  I am still fully capable of working, tending my home (mostly).  I can still be nice and do stuff for causes other than my own.  I can still support other people in their journeys, both joyous and terrifying.

I did some more research on just how rare it is that my benign nodule became malignant.  Apparently first-line FNA and US testing only has a 1.1% false-negative rating.  In an analysis of some 800+ nodules, only 4 ever became malignant later on.  The shortest time-frame of discovery from initial assessment to developing malignancy was 2 years.

In other words, the odds were STAGGERINGLY against me having thyroid cancer.

I’d play the lottery if I didn’t have a phobia of it.

No, seriously.  Here, dive into my own special psychosis for a moment…

Apparently there’s a term for people with a fear of randomized numbers.  That’s not exactly what my phobia is.  In fact, I love playing scratch-off tickets.  I shake, however, while I put the money in the machine and press the button for my ticket.  And going up to the counter for a Mega Millions ticket?  NONONONO.  Now, you might think–“Sure, you have anxiety, this must be some form of social anxiety issue.  I hate talking to people too!”

I don’t have a problem talking to people.  I mean, I am a classic introvert.  I am not likely to be the one to introduce myself unless I have to (“Hi!  My name is Ariawn, I am the nurse from hospice here to talk to you today about our services…” and then you can’t get me to shut up).  I will happily go up to the courtesy counter to ask for help at the grocery store.  Walking up to the McDonald’s employee to tell them my order is wrong even if there are 10 other people in line?  Oh yeah, I’m that person (but hey, I’m NICE about it, I used to have that job I know how much it sucks…”Excuse me, there are no pickles on my sandwich.  Can I get some please?”…you get better service this way, too, folks).

Nope.  It’s actually saying words…”Mega Millions ticket, please.”  I hyperventilate.  My palms sweat.  I get dizzy.

At least I save money this way.

Anyway.

If you Google search for information things like low-iodine diet, you’ll find things from 10+ years ago.  It’s amazing to see because 20+ years ago when my mom had her thyroid ablated for Graves’ disease, she never even heard of a low-iodine diet.  Now, she didn’t have cancer, so I have no idea how long they’ve been doing the low-iodine thing for cancer treatment.  However, as soon as 10 years ago, they’re doing the iodine diet, and the number one complaint I see is that NO ONE has any idea how much iodine is in food.  Some resources say strawberries are super high in iodine.  Others say all fresh fruit is safe.  Same with bananas.  Some say you can’t do potatoes, some say you can as long as you don’t eat the skin.

It seems the common consensus is that it depends on how iodine rich the soil was, but even without that, one of the things we haven’t clarified is that LOW IODINE is not the same and NO IODINE.  Less than 50mcg a day is the goal.  The minimum recommended amount is 150mcg.  Ish.

But it’s not like it’s a standard on Nutrition Facts labels.  I saw it on my multivitamin, but it’s certainly not listed on my organic Fruity Snacks from Costco.  (Which ARE low-iodine friendly, and DELICIOUS).

So we go by basic guides.  No dairy.  No seafood.  Limit your meat.  Must be fresh, not pre-packaged with brine.  No potato skins.  No spinach, no broccoli. No iodized salt.  Make sure your salt is NON-IODIZED.  Himalayan pink salt, which is so popular right now?  Some of it is low iodine…some of it isn’t.  You literally have no way of knowing without testing the chemical composition yourself because it is mineralized salt.  It has a mixed composition, which is part of why it’s so good for you if you’re an otherwise healthy person.  Plus the metaphysical benefit from cleansing those nasty positive ions from your environment.

Lick your salt lamp.  I dare you.

Subsisting on fruit and nuts isn’t so bad.

Especially with organic Fruity Snacks.

 

 

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T-Minus 7 Days to Radiation Containment Failure…

I enjoy the drama of it.

I miss theatre.  When I was in 8th grade, the theatre-bug bit me and all through high school I was an addict.  If I wasn’t on stage, I was behind it.  I directed my own show in the Black Box little theatre in my high school.  President of the Drama Club junior year.  Goddess knows I wasn’t the best actress, and my cats cringe when I sing, but I loved it.

The singing is even worse now.

One of the risks of thyroidectomy is vocal chord paralysis.  Now, I am fortunate, because my vocal chords are NOT paralyzed.  But that doesn’t mean they didn’t take a hit from two intubations and the swelling associated with surgery.  I went from having a high range and a low range (with NO middle range) to having exactly one very scratchy note.

I personally think it’s HILARIOUS but it makes my husband cry.  He has a voice like the angels.

In fact, he even starred in Urinetown several years before we met at one of our local community theatres.  I got to see a recording of it–he even did a good job with the gospel number!  When he was in Man of LaMancha a few years ago he sang “Little Bird, Little Bird.”  I went every night to hear him as the beauty of it would bring me to tears.  I wish he would sing around the house, but, he’s strangely shy about it.

I also wish our lives would let us do theatre.  We both miss it.  I may not be able to do a musical, but I can do a play.  Well, that’s not fair–even musicals have chorus lines or non-singing parts, or they need someone who can’t sing for the sheer hilarity of it.  I have no shame, I do not mind people laughing at my croaking efforts.

But, alas.  I am the breadwinner in our marriage, but I also came with a lot of student loan debt.  Therefore, we both have to work, and unfortunately, the lines of employment we’ve gotten ourselves involved in makes theatre difficult.  Theatre is a commitment.  I remember in high school I would get to school at about 6am for Academic Challenge practice (yes, NERD), school ended at about 2:00pm, rehearsals were every day from 3p-6p, and I would work at the pool from 6p until it closed at 9p.  Every.  Day.  And I still graduated valedictorian which means I did homework at some point.  It probably helped that I never had a lead role…

The same is true is community theatre.  There’s a reason tech week is called “Hell Week.”  And if you have a job that you aren’t sure when you’ll be able to get there like in mine?  Or one that takes your evenings as my husband’s does?  And you have a home, and sick family members (including the wife, i.e. me), and want to have children, and you have other commitments you have made as we have to coven and martial arts and other interests?

Well, something has to give.

Next week I start the process of radiation treatment.  It begins with Thyrogen injections, and hopefully they will tell me more of what to expect.  Thyca.org has been useful in giving me a heads up because I need to plan for how to keep my family safe from too much radiation exposure.  My dad will be coming to live with us for two weeks because I won’t be able to prepare food for anyone else, and my mom can’t always get upstairs these days to get her own food.

I need a ranch style home in the worst way.

I am glad I am getting Thyrogen instead of stopping Synthroid for my RAI.  I’m already struggling with keeping my calcium up, let alone being hypothyroid on top of it.  As I sit here my fingers and lips are tingling.

Time for more TUMS.

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Thyroid Cancer has Colors and They Are Pretty

I think I should make a ThyCa My Little Pony Mascot.hiResPony


How awesome is this?  I used the Thyroid Cancer colors and tried to make her vibrant and delightful.

Plus.  My Little Pony.  Amirite?

 

 

Since my diagnosis, it has been extraordinarily difficult to do any reading about it.  I know what I know about thyroid disease primarily through what I learned in nursing school and also talking to my mom about her Graves’ disease.  She had her thyroid ablated with radioactive iodine around 20 or so years ago, so she’s been there, except the experience is vastly different.  She did not have to follow a low iodine diet or have full-body scans.  However, they did more closely follow her bloodwork to adjust her Synthroid dose, whereas I won’t have a TSH done for another month.

There are a couple of things about this that are enough to make a person crazy.

  1. The Fatigue.  Oh my gods.  I have complained about being tired my entire life.  When I was diagnosed and treated for sleep apnea, and I suddenly had energy, it was the most amazing experience of my life.  I should have known something more was going on when that energy began to wane, too.  But even the fatigue of being obese with sleep apnea was nothing compared to THIS fatigue.  I’ve never been big on napping, but I could sleep all day.  I can’t stay asleep.  I have brain fog.  I have zero motivation but have a hefty to-do list.  …After my nap.
  2. Hypocalcemia.  Granted, I’m in the minority. My parathyroids are still stunned, apparently.  When you do a low-iodine diet, you can’t have dairy, and I did not realize just how much dairy was in my diet until I couldn’t have it anymore.  My protein shakes are dairy-based!  And I struggle to get in enough protein even with my 30g/serving shakes.  Of course, when you have a dairy-heavy diet, that means you are getting dietary calcium…that I’m suddenly not getting anymore.  I have been chewing ultra-dose TUMS like cows chew their cud.  I get a good 8g of oral calcium supplements every day, and I STILL had an ER trip because I started having chest pain.  Oh, and I’m also still having random muscle twitches that are irritating to say the least.  I had my dad drive me to work today because I was not sure I wouldn’t jerk the steering wheel.

 

But the strange thing?  I normally have horrific anxiety.  And I have only had one actual panic attack since my diagnosis, whereas prior I was using Xanax almost daily for rolling panic attacks.  I have a feeling my anxiety was heavily related to my thyroid issues.  Plus I do better when I have an enemy I can name.

When we were headed to the hospital to have the rest of my thyroid out, I was actually driving the car–it was a good distraction for me.  You can see the hospital from the freeway, and you actually have to take the exit AFTER and do a horseshoe turn to get to it.  As we passed the hospital, I pointed out my husband’s window and shouted, “THAT IS WHERE MY THYROID GOES TO DIE!”

Therapeutic.

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